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Barriers and Facilitators for Early TB Detection and Completion of Treatment in Urban India Barriers and Facilitators for TB Control in Urban India and Recommendations for an Effective ACSM Strategy – A Review by Population Services International/India (PSI) on behalf of Improving Healthy Behaviors Program (IHBP) and United States Agency for International Development (USAID) February 2013 This publication is made possible by the generous support of the American people through the U.S. Agency for International Development (USAID) under the terms of Contract No. AID-386-TO-11-00001. The content is the sole responsibility of IHBP, managed by FHI 360, a North Carolina, U.S.-based global nonprofit organization, and does not necessarily reflect the views of USAID or the United States Government. 0 Barriers and Facilitators for Early TB Detection and Completion of Treatment in Urban India Editorial team: Dr Nayanjeet Chaudhury, Research Director, PSI ([email protected]) Shri Kaliprosad Roy, National Research Manager, PSI ([email protected]) Dr Puspita Dutta, Assistant Research Manager, PSI ([email protected]) Dr Lakshmi Kota, Research Consultant, PSI ([email protected]) Dr Santosh Kumar Kaza, Research Assistant, PSI ([email protected]) Disclaimer The comments and discussions presented in this review are those of the editorial team and do not necessarily reflect the opinion of PSI, IHBP, or USAID. 1 Barriers and Facilitators for Early TB Detection and Completion of Treatment in Urban India Acknowledgement Population Services International (PSI) sincerely thanks the Improving Healthy Behaviors Program (IHBP) as well as the United States Agency for International Development (USAID) for the opportunity to conduct this desk review. The review aims to improve understanding of the tuberculosis (TB) scenario in urban India and highlight evidence-based recommendations for an effective advocacy, communication, and social mobilization (ACSM) strategy for urban TB control. The authors would especially like to thank the IHBP team — Rita Leavell, Sumit Asthana, Subrato Mondal, Lopamudra Paul, Pushpraj Dalal, and Amit Paliwal. It would not have been possible to bring the report to its current form without their valuable suggestions and comments. We also express our gratitude to PSI’s senior leadership, particularly Sanjeev Dham, Senior Program Director, for his much cherished guidance and support. Our special gratitude is due to Dr Venkat Raman from the Faculty of Management Studies, University of Delhi, for his valuable inputs on the situation of TB care in India. Last but not the least, we thank each member of the editorial team for their hard work in bringing out this report. IHBP is part of the Health Partnership Program Agreement (HPPA) between USAID and the Government of India. The project collaborates closely with the Ministry of Health and Family Welfare (MOHFW), the Ministry of Women and Child Development (MWCD), and their agencies and counterparts at state and district levels. IHBP focuses on behavior change in four program areas: family planning/reproductive health, TB, HIV/AIDS, and maternal and child health. Population Services International (PSI) delivers reproductive and other health products, services, and information to enable low-income, vulnerable people to change their behaviors and lead healthier lives. PSI-India, a registered society, began operations in India in 1988. It focuses on improving consumer access to health products, services, and information in 22 states and union territories. PSI programs comprise a full menu of targeted marketing activities in reproductive and child health and prevention of HIV/AIDS, TB, and malaria. 2 Barriers and Facilitators for Early TB Detection and Completion of Treatment in Urban India TABLE OF CONTENTS ABBREVIATIONS ................................................................................................................................................. 4 EXECUTIVE SUMMARY .................................................................................................................................... 6 1. INTRODUCTION AND OBJECTIVES .................................................................................................... 8 2. METHODOLOGY ....................................................................................................................................... 10 3. BARRIERS TO TB DIAGNOSIS AND TREATMENT ..................................................................... 11 3.1 BARRIERS TO EARLY DIAGNOSIS OF TB .............................................................................................................. 11 3.1.1 AWARENESS AND CORRECT KNOWLEDGE ABOUT TB SYMPTOMS AND CAUSES - PERSPECTIVE OF GENERAL POPULATION AND PATIENTS .............................................................................................................................. 11 3.1.2 BARRIERS TO EARLY DIAGNOSIS OF TB - PROVIDERS’ PERSPECTIVE ............................................................. 14 3.2 BARRIERS TO TREATMENT AND COMPLIANCE TO TB TREATMENT .............................................................. 16 3.2.1 DEMAND-SIDE DELAY IN SEEKING CARE – PATIENTS’ PERSPECTIVE ............................................................. 16 3.2.2 SUPPLY-SIDE DELAY IN DIAGNOSIS AND TREATMENT INITIATION – PROVIDERS’ PERSPECTIVE ............... 18 3.2.3 DISCONTINUATION OF TREATMENT – PATIENTS’ PERSPECTIVE ................................................................... 20 3.2.4 DISCONTINUATION OF TREATMENT – PROVIDERS’ PERSPECTIVE ................................................................. 21 4. PREVENTION AND CONTROL OF TB IN URBAN INDIA: POSSIBILITIES ....................... 22 5. BUILDING EVIDENCE FROM TRIED AND TESTED INTERVENTIONS IN INDIA AND ABROAD ................................................................................................................................................................ 26 6. POTENTIAL STRATEGIES FOR URBAN ACSM .................................................................................... 33 REFERENCES ………………………………………………………………………………………………………………….37 3 Barriers and Facilitators for Early TB Detection and Completion of Treatment in Urban India Abbreviations ACSM advocacy, communication, and social mobilization AYUSH Ayurveda, Yoga, Unani, Sidda, and Homeopathy BCC behavior change communication CME continuing medical education CTD Central TB Division DCGI Drug Controller General of India DMC Designated Microscopy Centre DOTS directly observed treatment, short-course DR-TB drug resistant tuberculosis GDF Global Drug Facility GFATM The Global Fund to Fight AIDS, Tuberculosis and Malaria GPS global positioning system HBC high-burden country ICRC International Committee of Red Cross IEC information, education, and communication IHBP Improving Healthy Behaviors Program IPC interpersonal communication KAP knowledge, attitudes, and practices LSHG local self-help group MDR-TB multidrug resistant tuberculosis NGO nongovernmental organization NRHM National Rural Health Mission NTP National Tuberculosis Programme 4 Barriers and Facilitators for Early TB Detection and Completion of Treatment in Urban India pHCP private health care provider PDA personal digital assistant PP private practitioner PPM public-private mix PSI Population Services International REACH Resource Group for Education and Advocacy for Community Health RMC RNTCP medical consultants RNTCP Revised National Tuberculosis Control Programme SMS short message service TB tuberculosis UHIN Uganda Health Information Network USAID United States Agency for International Development WHO World Health Organization 5 Barriers and Facilitators for Early TB Detection and Completion of Treatment in Urban India Executive Summary Globally, the burden of TB is estimated to be the highest in India. Of the estimated global annual incidence of 8.8 million TB cases in 2010, nearly 2.2 million cases were reported from India (Kapoor et al., 2012). After the failure of the National Tuberculosis Programme (NTP), the Government of India launched the Revised National Tuberculosis Control Programme (RNTCP) in 1997. The RNTCP was based on the global directly observed treatment, short-course (DOTS). By 2006, the whole (100 percent) Indian population was covered by the DOTS program. However, while huge improvements have been made in cure rates, India is yet to reach its goal of achieving 70 percent case detection and 85 percent cure rate. The current study reviewed the barriers the Indian government faces in reaching its goal. The barriers were looked at both from patients’ perspective as well as providers’ perspective. One key reason for the high prevalence of TB is that patients delay in seeking care from a qualified provider. This trend is largely due to poor awareness about TB and its symptoms among patients. Stigma is the other important reason, particularly among married women who are afraid of being abandoned by the spouse and in-laws. From the providers’ perspective, mismanagement in case diagnosis is the main factor fuelling this epidemic in India. Underutilization of sputum microscopy, overreliance on chest radiography, and use of suboptimal diagnostics, such as serological tests, are among the main factors resulting in disease mismanagement. With regards to treatment, lack of a uniform treatment regimen followed by private providers and lack of patient-centered approaches that enhance accessibility and acceptability of DOTS are causing hindrance. This report systematically presents the findings of the literature review under two headings: 1) barriers to early diagnosis of TB and 2) issues related to TB treatment and compliance. The barriers to early diagnosis of TB are further divided into two sections: 1) patient and general population’s perspective and 2) providers’ perspective. Similarly, issues related to TB treatment and compliance are also discussed from patients’ as well as providers’ perspectives. Evidence was also sought in the literature about new interventions to improve the current situation. Towards the end of the report, the reviewers make the following recommendations for policy advocacy and pilot experiments: 6 Barriers and Facilitators for Early TB Detection and Completion of Treatment in Urban India A. A comprehensive ACSM strategy, including multiple channels of communication, to raise awareness levels in the general population and use of mid-media and interpersonal communication (IPC) to increase institutional referral for early diagnosis and treatment of suspected TB cases B. Use of technology to improve referral linkages, tracking of patients for follow up, and prevention of treatment lapses and drug resistance C. Appropriate engagement of private practitioners (PPs) through an effective public-private partnership approach 7 Barriers and Facilitators for Early TB Detection and Completion of Treatment in Urban India 1. Introduction and Objectives In 2010, globally there were 8.8 million (range, 8.5–9.2 million) incident cases of TB, 1.1 million (range, 0.9–1.2 million) deaths from TB among HIV-negative people, and 0.35 million (range, 0.32–0.39 million) deaths from HIV-associated TB. India emerged as the country with the highest TB burden, accounting for one fifth (21 percent) of the global incidence. The global annual incidence estimate stood at 9.4 million cases, of which 2 million cases were estimated to come from India. India ranked 17 among 22 high-burden countries (HBCs) in terms of TB incidence rate. (Source: WHO global TB report, 2010). Figure 1: TB incidence by country Source: WHO Global TB report, 2010 The Government of India’s 12th five-year plan envisions a ‘TB-free’ India, with reduction in the burden of disease until it is no longer a major public health problem. To achieve this vision, the Revised National Tuberculosis Control Programme (RNTCP) has adopted ‘universal access’ as its new objective to ensure quality diagnosis and treatment of all TB patients in the country. The program plans to achieve this by deploying rapid diagnostics for TB and drug resistant TB (DR- TB), expand services for management of multidrug resistant tuberculosis (MDR-TB), strengthen urban TB control, bolster public-private mix (PPM) initiatives, improve the quality of basic directly observed treatment, short-course (DOTS), and align the initiatives with the National Rural Health Mission (NRHM) supervisory structure. 8 Barriers and Facilitators for Early TB Detection and Completion of Treatment in Urban India Objectives The main objectives of the current situational analysis are to:  Identify key issues related to TB control scenario in India  Review existing interventions for TB control in India and globally  Outline probable urban advocacy, communication, and social mobilization (ACSM) strategies for TB 9

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an effective advocacy, communication, and social mobilization (ACSM) strategy for urban TB control. Studies that suggested strategies for ACSM, relevant to TB control in India. We found 78 40 Pantoja A, Lönnroth K, Lal SS, Chauhan LS, Uplekar M, Padma MR, Unnikrishnan KP, Rajesh J,.
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